their perfect geometry was regarded as being similar to the eastern mandala,

a meditative symbol signifying the paths to enlightenment,

the human desire for wholeness.

it seemed a simple and profound fit.

a single red rose.

one of the most recognized and revered flowers.

a symbol of love, honor, sacrifice, and perfection.

passion red for matters of the heart,

conviction, purity, devotion, loyalty, compassion.

leaves. yes, genzyme green, after all, what could signify

vitality and life more than the bold green lettering of genzyme?

a rose…once rare,

transformed by the hands of knowledge,

the study of cultivating, the ability to strengthen, enhance and offer new life.

some will see a rose

others, i hope, will see their triumph,

their perfect offering to the lives of others,

the way i see each of the workers at genzyme

and the inextricable way we are all bound to each other in

perfect concentric circles of energy and light.

how could i possible begin to image that as i created a window

in hopes of helping others who live with the challenges of

rare and debilitating diseases a door was opening

that would in return

flood my heart in impossibly profound ways?

Dear Rebecca,

I hope this email finds you well and that you had a wonderful Easter weekend. My name is Erin. Phillip Maderia was kind enough to provide your email address so that I can write you. I work at Genzyme as a Quality Manager. I have a beautiful 7 month old granddaughter named Lily who was diagnosed with Pompe just weeks after birth. At age 6 months she was also diagnosed with another rare genetic disorder resulting in Hyper Cardiomyopathy. What a special flower our Lily is!

I was introduced to NORD when I began working for Genzyme three years ago. I have pledged every year because my heart goes to those with rare disorders, especially to those where there is not yet a diagnosis, therapy or cure. This year really hit home for our family as I was wondering what I could possibly do not only for the organization but for my granddaughter as well.

“A Rose…” was then posted on the silent auction website. Wiping the tears from my eyes I thought what perfect timing! After I read what you wrote about this beautiful work of art I thought how wonderful, I can make a sizeable donation for a great cause at the same time procure a priceless treasure our Lily can hold dear in her life forever; a symbol of beauty, strength, courage, love and most importantly inspiration. Encouragement to help her find her inner strength as she makes her way through life and inspiration so that no matter what challenges she faces she can create and succeed at anything she has a passion for. This is exactly what her parents want for her.

Folks like you Rebecca will be Lily’s inspiration throughout her life. Exposure to examples of your courage, strength and love for life will help her develop the emotional strength she will need to lead a happy healthy life. I don’t know you but somehow it feels like I do because these attributes clearly are present in your glasswork and I thank you a million times over for that.

We hope you are doing well. I would like to stay in contact with you if it’s OK, just to check up on one another as now you have touched our lives.

On behalf of Lily and her extended family, I want to thank you from the bottom of our hearts for your thoughtful creation, a lovely piece we will treasure for many years to come. Her family now refers to this proudly displayed stained glass treasure as “Lily’s Rose.” A one-of-a-kind lovingly crafted gem just like our Lily. Our wish is that you can autograph the story you wrote about this piece and perhaps provide a photo of yourself so that Lily can have it as a keepsake and to share with others.

Wishing you well and warmest regards,

Erin

a rose.

the simple hope of helping others.

who could have imagined would align with the generosity of a

loving grandmother

to flood my heart with a budding friendship and the arrival of her magnificent